It's been four years and eight months since Charlotte's life-saving kidney transplant. Charlotte received the gift of life from a living donor, her dad, on April 9, 2019. Since her transplant, Charlotte's life has changed quite a bit. The days of nightly peritoneal dialysis and constant fear of infection are long gone! However they have been replaced with the unspoken fear of organ rejection. This fear is always present in the backs of our minds. For a full year after Charlotte's transplant, our lives were so much less stressful. At first we had to make many trips to the hospital for blood work and checkups with her nephrology team, but after a few months we were allowed to have her blood work done at a local labcorp each month. Frequent blood work is necessary to ensure all of her medication levels and kidney function are holding steady.
The honeymoon period was short-lived. In April 2021 Charlotte had her first scare with antibody rejection. Luckily her amazing Nephrology team at Children's National Medical Center caught the signs early and intervened. After a kidney biopsy and a few rounds of infusions to reset her B cells, her body reset, and the antibodies stopped attacking her transplanted kidney!
In August 2021, Charlotte officially started school. We chose to home school Charlotte due to her medical needs and fragile immune system. She needs to be given water, food and medications through her G tube 13 times each day, which would be a big challenge if she were to attend a formal school. Charlotte thrives in home school and loves Science, as well as all hands-on activities. She is also a sponge and quickly learned how to read! It was Charlotte's second year of taking weekly horseback riding lessons, where she loved her horses, as well as her riding buddies.
In 2022, Charlotte started 1st grade and excelled in Reading, Math, Science and Social studies. She most enjoyed learning about all of the states. She was especially interested in the state birds, flowers, and their flags. Charlotte started Occupational therapy this year, as well as continued weekly feeding therapy sessions. Eventually we hope that Charlotte will be able to eat by mouth instead of being dependent on her G tube. However, this is a long process, and she needs to constantly practice to grow the muscles needed to chew and swallow. Charlotte is gaining skills weekly with her riding lessons and loves spending time at the horse barn.
In April of 2022, Charlotte was able to go on her Make a Wish trip to Sanibel Island Florida. During this week-long trip, we enjoyed collecting shells on the beach, swimming in the pool, and we even got to go on a private boat adventure to see dolphins, manatees, and tortoises in the wild! It was a trip none of us will ever forget!
In 2023, Charlotte started 2nd grade. This year has been a big challenge for her emotionally. Unfortunately, trauma from the past seven years of living a complex medical life has started to come to the surface. Since Charlotte was born, she has had to take many medications, have regular blood-work, be connected to dialysis, be cautious of germs, and be admitted to hospitals whenever she was told she needed to. She has been told what to do A LOT and is starting to realize the lack of autonomy she has in her own life. As she is maturing and getting older, she is starting to exert her independence and her opinions. Charlotte has also started to exhibit anxiety regarding separation from me (her mother), as well as with any situation that is out of her normal routine - especially anything medically related. I have no doubt this is fairly common for children with lives that are medically complex. Charlotte is now on her 4th year of horseback riding and is doing great. During her weekly lessons she is gaining confidence, responsibility, and strength. She amazes us every week!
Most recently in October 2023, Charlotte's Nephrologists have again noticed that her creatinine levels have started to climb, as they did in 2020. Her creatinine level is an indicator for how well her kidney is filtering waste from her blood. An increased level can indicate that kidney function has slowed. We are scheduled for the 18th of December to have her second kidney biopsy, which will allow her Nephrology team to investigate if there is any type of rejection occurring in her transplanted kidney.
Being a kid who is living with a terminal disease is not an easy feat. We are amazed and proud of all that Charlotte has accomplished and persevered through in her short 7 years of life. We look forward to continuing to watch Charlotte blossom into a unique and independent young lady in the coming years!